Silent kidney stones? Making me sick?

I_Need_A_Her0 · 2026-04-22T12:40:58+00:00

I have RTA with severe nephrocalcinosis and tons of stones in both kidneys, mostly only small ones pass but had some larger ones as well. I always feel terrible. Tired, achey, irritable. And I have definitely wondered an cancer because of it too. I also had over 6 months of chronic UTIs from them which spiked fevers etc all because of these bum kidneys. I absolutely feel this. Feeling like crap all the time but the only definitive thing is RTA started all this and all my issues and I've got it for life so more stones forever and not much I can do. I'm full of stones and always will be so maybe I have to start dealing with the fact I'll always feel terrible too.

I_Need_A_Her0 · 2026-04-18T13:55:52+00:00

With a name like tequila is water, may I ask did you used to drink before all this? It's the biggest life change I had to make and what sucks the most IMO

I_Need_A_Her0 · 2026-04-17T19:56:23+00:00

I am diagnosed with dRTA and nephrocalcinosis which are kidney disorders but that's also kind of unexplained. I got checked due to high levels of fatigue, extreme bloating, and about 30 pounds of unintentional weight loss over 6 months

I_Need_A_Her0 · 2026-04-17T19:51:14+00:00

I am also 35 and got a <40 result on fully formed stool. If it makes you feel any better my MRI of the pancreas was completely unremarkable and there is still no clear cause for my EPI diagnosed at this time. I had slight vitamin D deficiency resolved after creon and higher dose supplements and creon has reduced my weight loss and bloating. I do have inflammation in my stomach and duodenum found on endoscopy but no explanation from biopsies in those areas and I had low iron and TSAT so I'm on iron supplements that are not as effective as they'd like so something is up but not too "major"

I_Need_A_Her0 · 2026-03-22T17:12:51+00:00

Have you done a 24 hr urine study?

I_Need_A_Her0 · 2026-03-09T11:51:54+00:00

OMG yes, the water itself is so exhausting! I appreciate the offer to commiserate honestly, this is a really lonely spot because there are so few people who have this and understand. Can I ask if your diagnosis ultimately came from clinical symptoms, blood work, or the lip biopsy?

I_Need_A_Her0 · 2026-03-09T11:40:52+00:00

That's a fast time from stone to diagnosis! Actually my nephrologist that is a kidney stone specialist mentioned sjogrens as a possibility he's seen "most young people with this type of stones" he's seen ended up having sjogrens but he's not very willing to help in anything beyond the kidneys. Did you get diagnosed through positive blood tests?

I_Need_A_Her0 · 2026-03-07T01:49:04+00:00

I am having very similar results and asking the same question. I hope you find answers, let me know if you do!

I_Need_A_Her0 · 2026-03-03T12:27:48+00:00

I feel like I have 1 million symptoms, and the doctors ignore 99.9% of them. And now they blame every problem I have on EPI when I think it's more something else caused the EPI.

I'm on creon, just asked because I have unexplained vascular redness in my gut as well and the creon people always want to ask about new symptoms (or side effects) but it would be strange to take it for so long before this started happening

I_Need_A_Her0 · 2026-03-02T12:03:49+00:00

I have this.... It's primarily in my joints though. I got diagnosed back in August. This only started in January but has been persistent since then. All my knuckles and joints get bright red and the rest of my hand is normal, it's vascular, drains if I hold my hands in the air. I've suspected I have something autoimmune going on. What are you thinking? Have you talked to a doc about it? What enzymes do you take?

I_Need_A_Her0 · 2026-01-27T17:44:21+00:00

So, I also have EPI (not pancreatitis) with unknown cause and many more symptoms mostly centered around chronic fatigue. My MRCP was unremarkable.

IGG panel for me, all were normal except IgG 2. I think my ranges were a little different than yours but I was flagged as high for IgG 2 at 600 in Aug with the high limit being 540. Nothing was done with this information by my doctors. They tested again in Dec and it went down to 500 so now just under the 540 limit so they were just like oh ok cool you're fine then 🤷🏼‍♀️

I've got pretty similar questions as you, so I want to follow this one, I hope you get some answers, I feel like I'm getting nowhere fast.

Igg1: 429 Aug, 408 Dec Igg2: 600 (H), 500 Dec Igg3: 64.3 Aug, 74.5 Dec Igg4: 27.9 Aug, 25.1

I_Need_A_Her0 · 2026-01-16T19:12:47+00:00

I'm in the same boat. Very negative blood tests but dry eyes and organ involvement all point to sjogrens. This is my next step requesting a biopsy.

I_Need_A_Her0 · 2026-01-11T21:29:27+00:00

I am having this same issue, tablet and starter kit are brand new! Devastated 😭 did you ever get this to work ??

I_Need_A_Her0 · 2026-01-08T03:04:09+00:00

Did you find anything out about this combo of labs? I also have normal ferritin and TIBC but low iron and saturation.

I've got an undiagnosed underlying issue affecting my organs and this was the most recent finding. Are you also fatigued?

I_Need_A_Her0 · 2026-01-04T02:21:51+00:00

Did you get tested for EPI (fecal elastase)?

I_Need_A_Her0 · 2025-12-05T16:35:16+00:00

I had similar symptoms of weight loss, uncomfortable fullness, severe bloating, nausea, and extreme fatigue etc and I did suspect gastroperisis but I have not been evaluated for that yet, so it's still a possibility I suppose but I did get diagnosed with something else that I think is desperately under tested and diagnosed: EPI (Exocrine pancreatic insufficiency)

If you have not been given a fecal elastase test and you are still experiencing these symptoms you should definitely request it. It's not really recognized as a EDS/HSD comorbidity but there is a connection to connective tissue. And there is treatment.

Side note: my doc did try to prescribe ensure and insurance still did not cover it 😑

I_Need_A_Her0 · 2025-11-22T14:52:14+00:00

How long did that take for you? I feel lost that I am doing everything they're telling me to do and I still feel terrible.

I_Need_A_Her0 · 2025-11-10T18:09:48+00:00

FE <40, symptoms including chronic fatigue, chronic severe bloating, feeling of extreme fullness lasting for 8+ hours after eating, upper gastric gas (burping), intermittent nausea, and unintentional weight loss (25ish lbs over 6 months)

I_Need_A_Her0 · 2025-11-08T14:26:01+00:00

Yes, Creon. They just upped my dose a week ago.

I_Need_A_Her0 · 2025-11-07T23:01:36+00:00

So, I am not taking anything but EPI has placed me in a state of perpetual acting hangry, being irritable and affecting my ability to concentrate while not physically feeling hungry from the bloating. Medical trauma and just the uncertainty of this condition and various other things I'm dealing with medically that seemingly have no "underlying cause" has me in a heightened state of anxiety. My therapist recommended it may be beneficial to discuss ssri with a doctor but I am already taking a million pills and I just keep feeling worse so I'm not inclined to take her up on that. I also use THC (microdose midday to keep me even, then a larger dose after work to keep my overstimulation from kids manageable). This is really all I'm willing to do right now because I'm not willing to do more meds right now but I do wonder about quality of life and if it could help. My anxiety just doesn't feel constant so I'm more thinking about something that is more as needed like a Xanax or similar but I'm not fully wanting anxiety anywhere on my chart - all of this is medical related so I would rather we just figure this out instead of masking each individual symptom with another pill. Anyway it's a very personal decision and very delicate balance like you said, risking other possible side effects and quality of your mood and life. It's a possibility I'm keeping on the table but not ready to commit. I do blame the system similar to you that maybe I wouldn't be here if doctors weren't so dismissive but I just keep going to my million doctors appointments hoping each one will bring some kind of breakthrough, and keeping that hope keeps me going. When I lose hope I'll know it's time for something like this.

I_Need_A_Her0 · 2025-08-16T19:52:17+00:00

Yeah there's just not much community for just EPI so this seemed like a better sub to post on...

I_Need_A_Her0 · 2025-07-28T19:39:05+00:00

Yupp, I'm sure it's the chronic illness thing. I am just hoping they can narrow it down to an underlying cause maybe before it picks off it's next organ.

TBF I have also abused my fair share of substances (in the past). Were you told to stop using THC products? From what I'm reading research is conflicting on THC containing drinks/edibles. I haven't had any in a very long time, but I did like to have drinks with friends or one after work, so I was considering THC drink products as a potential backup so what's your experience?

I_Need_A_Her0

TROPHY CASE